I am really bad at waiting. Anyone who knows me well would tell you that patience is not one of my strengths. I have a really hard time just sitting back and letting things unfold versus pushing them along. This wait to head up to the hospital is making me absolutely crazy. I'm ready to get this over with. My anxiety level is through the roof today and the last couple of days. It's not fear of having the surgery, but there are a lot of unknowns I'm going to have to tackle head-long and I am freaking out a little bit.
This anxiety problem is compounded by a lack of running. Yesterday I attempted my first run since Saturday and it did not go well at all. I've had a nagging pain in my low left calf for a couple of weeks and last night it was just too much to ignore. With my planned half-marathon run this Saturday, I see no need to push through it. So...no more running until Saturday which rules out a major source of stress relief. Instead I've been filling my days with episode after episode of The Office which I would normally watch while on the treadmill.
I'm still struggling with my food issues, but I had a bit of an epiphany at my Weight Watchers meeting last night. It's partly the stress and anxiety that has me reaching for food, but I think the bigger thing is fear of failure and what it means. This is not the first time in my life that I've attempted to lose weight. I've had some success in the past, but I've never made it to my goal weight (or even what I would call relatively close). Now I have to do it. Once I have this first surgery then I'm locked in. If I ever want a chance at the j-pouch, I need to lose fifty more pounds. It's no longer just to buy cute clothes, feel better, or run a bit faster. It's about regaining the choice of how my body handles one of its most basic functions. That's freaking huge, people. And it has me freaked out to say the least. I am trying to get a grip on it though. I keep reminding myself that I was already well on my way with this journey (half way to goal to be exact!). I keep telling myself that it's the same road, the same vehicle, the same driver...all I have to do is keep moving in my same direction. I can do it. I have to do it. I will do it.
I think tomorrow I will start packing my bag for the hospital. I have kind of a mental list going, but I think actually getting some of the stuff in the bag will help me feel less anxious because once it's in there, I can quit reminding myself that I need to take it with me (whatever it might be). My oldest is out of preschool on Friday and has requested we go to a "squirrel feeder store" to buy a squirrel feeder to put on the tree in our front yard. He also wants to go to a restaurant for lunch. So tomorrow will be my best chance to get the bulk of my packing done and out of the way.
My hope is that someday someone with UC will be reading this blog as they are considering surgery. Thinking about that person is what kept me quiet the last day or so. I knew I was freaking out but I wasn't sure I wanted to admit it and write about it. I finally decided that it's better to be real and put it out there. I know this is not the last time that some part of this is going to suck and I'll have to share it anyway. It's the reality and that is what I want people to know. So to you, future UC sufferer and blog reader: I will be ok and so will you. I just know it.
Wednesday, March 16, 2011
Sunday, March 13, 2011
Little Wonders....
With thanks to Rob Thomas....
let it go,
let it roll right off your shoulder
don't you know
the hardest part is over
let it in,
let your clarity define you
in the end
we will only just remember how it feels
our lives are made
in these small hours
these little wonders,
these twists & turns of fate
time falls away,
but these small hours,
these small hours still remain
It's true...the hardest part is over. Making this decision was actually the hardest part. During my run yesterday I was trying to explain to a running friend that I've learned there seem to be three camps when it comes to this whole surgery for UC thing.
Camp 1 are the folks who decide to opt for surgery (sort of) on their own time table. They may or may not feel like they've tried everything out there, but they are ready to take that step. The luxury of being in this camp is one typically has the opportunity to do a lot of research, meet with a surgeon and talk about options, and then decide what you want to do and when.
Camp 2 are people who end up with emergency surgery or just get so sick they can't wait. Sometimes they never even know the name of their disease until a surgeon is telling them they are going to have to take their colon. When I read their stories, it breaks my heart just a little bit. I can't imagine having something of this magnitude thrust upon you all at once like some horrible bitter dark pill you have to figure out how to choke down. How do you come back from that? The people that do it are some of the bravest out there, that much I'm sure of.
Camp 3 seems to be those who will fight and go to any lengths to save their colon. I was in this camp for a long time. Sometimes the people in this camp find themselves unexpectedly thrust into Camp 2. Other times they slowly journey in the direction of Camp 1. Some of them stay firmly planted where they are for the duration of their battle with this illness.
I spent some time during that run on Saturday thinking about these different places that all of the UC'ers I've come across are at on this spectrum. (Hey, it takes me a long time to cover nine miles!) The one thing I know for sure is that there is no right or wrong answer. We all have to be where we are and respect our journey as we manage our own illness. At the same time, we have to respect where other people are on their own road. Before this last flare, I would have never believed you if you would have told me I would be counting down the days until they were going to remove my colon. There is an almost seismic shift that happens, but when it does and you decide you're ready there really is no going back. I know the recovery is going to be slow and painful. I know adjusting to life with my ileostomy is going to be challenging and there will be set backs along the way. I know life without a colon is never going to be the same as life without UC could have been. I know all that, yet I can move forward with amazing clarity and conviction that I am doing the right thing here. I don't know how to explain the change that happens, but I promise you that when it does you know it. When you are ready, you just know. I don't really think anymore about whether or not I'm doing the right thing....it's more like, "Ok. Now how do I get through this?"
I spent this weekend thinking about a lot of little things. Sometimes they stabbed me right in the heart with a ferocity that just about took my breath away. Saturday morning's run was beyond amazing! I've come so far since starting back up in January. I felt strong and able. The weather was finally somewhat warm and the sun was shining. I had good music and good company. It was all I could ask for in a training run. When I let all that soak in, I got overwhelmed with the realization that it was the last training run before I do my personal half marathon next weekend. All that sunshine and strength I was feeling became this almost panic of needing to get off of that bike path before I lost it and started crying. I ended up completing my eighth mile much faster than I should have because I let myself take off and gave in to that feeling of wanting to escape and outrun those emotions. I paid for it during the ninth mile, but at that moment it was what I needed.
Speaking of what I needed, the running community continues to give back to me in amazing and unexpected ways. I spoke with a guy in my pace group who is training for a full marathon right now. I wanted to know what was on his mileage for next Saturday as I was still looking for someone to go 13.1 with me. He asked me why I was deviating from my training plan so I took a moment to explain what was going on. First, he was blown away by the idea of j-pouch surgery and that such a thing was even possible. Then, before even looking at his schedule he said, "Absolutely I'll do it. I would love to!" It turns out he was scheduled for 12 miles anyway, so this fits well with his plan. He was so supportive and wanting to help me and this is someone I've only known since January and only talked to briefly before and after our runs. I know I keep saying this, but there is something magic about runners as a community. I am so lucky to have all of these people in my life!
Some of those little things just made me smile and really boosted my spirits. I keep thinking about "these small hours, these little wonders" as I soak up as much as I can of my boys. I think that is going to be the single hardest part of this whole thing. I can stand the pain, I will rehab my body, but my heart just aches at the idea of being away from my sons while I am up there in the hospital. I know they will be fine and I know I will be fine, but that doesn't mean I have to like it or look forward it. I've been savoring everything I can about them, even the way my oldest boy makes one hell of a mess anytime he attempts to eat something. I keep smiling at my baby just to see him smile back and how it consumes and lights up his entire being. I can't get enough right now of their skin, their hair, the weight of their arms around my neck and how my oldest crawled into my bed early this morning and asked, "Can I sleep right next to you?"
I'm trying to stash it all away because these are the little wonders of which our lives are made. I am doing this for me, but I'm also doing it for them. I want to be there, and active and engaged, in every part of their lives as they grow and change. I want to show them how to overcome and triumph over the things that try to suck the life out of you when you aren't looking. I want them to see that you don't have to let something like this define you. When I scrape together every bit of my energy and tell my body that says, "Sorry, not today," to shut-up and I push myself for nine miles (or 13 next weekend!) it's partly for me but it's also a lot for them. There will come a day when they tell me they can't and I will be able to tell them all about this and about not giving up even when everything is stacked against you. The twists and turns of fate may hand you something you never asked for or wanted, but in the end it's up to you what you do with it, how you handle it, what you learn from it, and whether or not you let it crush you or use it to grow. I am going to grow. I don't know any other way.
let it go,
let it roll right off your shoulder
don't you know
the hardest part is over
let it in,
let your clarity define you
in the end
we will only just remember how it feels
our lives are made
in these small hours
these little wonders,
these twists & turns of fate
time falls away,
but these small hours,
these small hours still remain
It's true...the hardest part is over. Making this decision was actually the hardest part. During my run yesterday I was trying to explain to a running friend that I've learned there seem to be three camps when it comes to this whole surgery for UC thing.
Camp 1 are the folks who decide to opt for surgery (sort of) on their own time table. They may or may not feel like they've tried everything out there, but they are ready to take that step. The luxury of being in this camp is one typically has the opportunity to do a lot of research, meet with a surgeon and talk about options, and then decide what you want to do and when.
Camp 2 are people who end up with emergency surgery or just get so sick they can't wait. Sometimes they never even know the name of their disease until a surgeon is telling them they are going to have to take their colon. When I read their stories, it breaks my heart just a little bit. I can't imagine having something of this magnitude thrust upon you all at once like some horrible bitter dark pill you have to figure out how to choke down. How do you come back from that? The people that do it are some of the bravest out there, that much I'm sure of.
Camp 3 seems to be those who will fight and go to any lengths to save their colon. I was in this camp for a long time. Sometimes the people in this camp find themselves unexpectedly thrust into Camp 2. Other times they slowly journey in the direction of Camp 1. Some of them stay firmly planted where they are for the duration of their battle with this illness.
I spent some time during that run on Saturday thinking about these different places that all of the UC'ers I've come across are at on this spectrum. (Hey, it takes me a long time to cover nine miles!) The one thing I know for sure is that there is no right or wrong answer. We all have to be where we are and respect our journey as we manage our own illness. At the same time, we have to respect where other people are on their own road. Before this last flare, I would have never believed you if you would have told me I would be counting down the days until they were going to remove my colon. There is an almost seismic shift that happens, but when it does and you decide you're ready there really is no going back. I know the recovery is going to be slow and painful. I know adjusting to life with my ileostomy is going to be challenging and there will be set backs along the way. I know life without a colon is never going to be the same as life without UC could have been. I know all that, yet I can move forward with amazing clarity and conviction that I am doing the right thing here. I don't know how to explain the change that happens, but I promise you that when it does you know it. When you are ready, you just know. I don't really think anymore about whether or not I'm doing the right thing....it's more like, "Ok. Now how do I get through this?"
I spent this weekend thinking about a lot of little things. Sometimes they stabbed me right in the heart with a ferocity that just about took my breath away. Saturday morning's run was beyond amazing! I've come so far since starting back up in January. I felt strong and able. The weather was finally somewhat warm and the sun was shining. I had good music and good company. It was all I could ask for in a training run. When I let all that soak in, I got overwhelmed with the realization that it was the last training run before I do my personal half marathon next weekend. All that sunshine and strength I was feeling became this almost panic of needing to get off of that bike path before I lost it and started crying. I ended up completing my eighth mile much faster than I should have because I let myself take off and gave in to that feeling of wanting to escape and outrun those emotions. I paid for it during the ninth mile, but at that moment it was what I needed.
Speaking of what I needed, the running community continues to give back to me in amazing and unexpected ways. I spoke with a guy in my pace group who is training for a full marathon right now. I wanted to know what was on his mileage for next Saturday as I was still looking for someone to go 13.1 with me. He asked me why I was deviating from my training plan so I took a moment to explain what was going on. First, he was blown away by the idea of j-pouch surgery and that such a thing was even possible. Then, before even looking at his schedule he said, "Absolutely I'll do it. I would love to!" It turns out he was scheduled for 12 miles anyway, so this fits well with his plan. He was so supportive and wanting to help me and this is someone I've only known since January and only talked to briefly before and after our runs. I know I keep saying this, but there is something magic about runners as a community. I am so lucky to have all of these people in my life!
Some of those little things just made me smile and really boosted my spirits. I keep thinking about "these small hours, these little wonders" as I soak up as much as I can of my boys. I think that is going to be the single hardest part of this whole thing. I can stand the pain, I will rehab my body, but my heart just aches at the idea of being away from my sons while I am up there in the hospital. I know they will be fine and I know I will be fine, but that doesn't mean I have to like it or look forward it. I've been savoring everything I can about them, even the way my oldest boy makes one hell of a mess anytime he attempts to eat something. I keep smiling at my baby just to see him smile back and how it consumes and lights up his entire being. I can't get enough right now of their skin, their hair, the weight of their arms around my neck and how my oldest crawled into my bed early this morning and asked, "Can I sleep right next to you?"
I'm trying to stash it all away because these are the little wonders of which our lives are made. I am doing this for me, but I'm also doing it for them. I want to be there, and active and engaged, in every part of their lives as they grow and change. I want to show them how to overcome and triumph over the things that try to suck the life out of you when you aren't looking. I want them to see that you don't have to let something like this define you. When I scrape together every bit of my energy and tell my body that says, "Sorry, not today," to shut-up and I push myself for nine miles (or 13 next weekend!) it's partly for me but it's also a lot for them. There will come a day when they tell me they can't and I will be able to tell them all about this and about not giving up even when everything is stacked against you. The twists and turns of fate may hand you something you never asked for or wanted, but in the end it's up to you what you do with it, how you handle it, what you learn from it, and whether or not you let it crush you or use it to grow. I am going to grow. I don't know any other way.
Friday, March 11, 2011
When Mommy Is Sick
I am fortunate enough to be mom to two of the most beautiful and wonderful boys in the world. Ok, so maybe I'm a little biased in my view, but my boys are definitely the coolest thing in my part of the universe and I love being their mom. Sometimes its a challenge when I'm having a bad UC day. What I really hadn't thought about too much was how this illness effects them overall.
My youngest is not quite seven months old, so I don't think there is much impact for him at this point. He loves snuggling up in bed with Mommy, so even my bad days aren't too much of a burden on him. Probably the only negative experience for him is when I have to quickly stick him in his crib (especially if he was in the middle of a feeding!) so I can run into the bathroom. I've spent a few days like that with him crying in the crib and me trying to console him from the bathroom letting him know I'd be right there as soon as I could. Not fun, but probably not anything that will stick with him later on.
My oldest is almost four years old. He's seen me in pretty bad shape. I can remember when they wanted me to try an iron supplement and I reacted very poorly to it. The result was an extremely painful flare up that had me laying on the bathroom floor crying, sweating, and moaning until I finally puked up everything I'd eaten in the previous year (at least that's what it felt like). It was just my boy and I at home that morning, and I remember him being really scared. I tried to hold myself together as much as I could, but the pain was just too much. He was so sweet patting me and hugging me and telling me it was ok. When I finally threw up, he cheerfully told me I would feel better now. We spent the morning snuggled up on the couch watching cartoons and he just wanted to stay next to me the whole time.
I try not to let him know when I don't feel good because he worries and I don't want him to feel uncertainty. Sometimes it can't be helped though. There are plenty of mornings where his getting ready for school routine is conducted with me sitting on the toilet and him bringing me his clothes so I can help him dress, etc. He knows sometimes my belly hurts and I'm tired and need lots of naps. I've never really tried to explain UC to him though because I wasn't really sure how to do it.
A few days ago I started talking to him about Mommy going to the hospital. I wanted him to have time to digest this news and ask me any questions he might have. At first there was just a lot of "Are you going to the hospital now?" followed by my reminding him how many more days were left before I go. We would go over what is going to happen and that his grandma is going to come take care of him. I thought he was taking it all pretty well and he really didn't seem to have any questions. Then I picked him up from preschool yesterday.
The teacher handed me an orange paper with a disciplinary report written out on it. I knew immediately what the orange meant as it was all laid out in the parent handbook. I also remember reading about this process and feeling certain I'd never see one of those papers. Ha! Joke's on me! At any rate, apparently my sweet boy has been freaking out at school the last few days which culminated in him kicking, hitting, and screaming at a teacher in the nap room yesterday. This kind of thing is entirely not like him and as the director and I were discussing what on earth could have gotten into my typically mild mannered young man it struck me....he's more upset about this hospital thing than he is letting on. He just doesn't know how to talk about it. I made the decision to share the news of my upcoming surgery with them and they agreed it probably had a lot to do with it. I decided I needed to be more proactive in talking with him about what was happening and why.
It's always tricky trying to explain something like illness and surgery to a child of this age. I didn't want to make it sound too scary, but I wanted to be as honest as I could so he would understand. As I was trying to figure out the best way to go about about this, I remembered a book he got for Christmas called The Gas We Pass. There is a pretty good kid friendly drawing in this book that shows the digestive system and how food passes through it. I got the book out and showed him the drawing and pointed out the large intestine. I told him that part of my body was really sick and the doctor at the hospital was going to do an operation to take it out and make me better. He actually got kind of excited and said, "They are going to take the sick part out of your belly! Cool!" We talked about how right now with that sick part in there my belly hurts a lot and I have "mean poops" (his own terminology for diarrhea) a lot of the time. I told him when they took the sick part out it would fix that. I decided to take this opportunity to explain the ostomy bag to him, too. It took a couple of tries to convince him that I wasn't going to poop out of my bottom anymore, but into a bag on my belly. He actually thought it was hilarious that farts would come out into the bag, too. He wanted to know if we could pour the farts in a bottle to keep them! I told him that probably wouldn't work too well.
Then he looked up at me with those big brown eyes and asked me, "Mommy, what will the bag on your belly look like?" I had actually been waiting for this question and I asked him if he wanted to see a picture of one on the internet. He said he did. I went to Facebook, pulled up the Uncover Ostomy photo page, and showed him some pictures of women with their ostomy bags. I steered clear of the post-op pics there and focused on the others. There are some great pictures there of people looking proud and happy with their ostomies. He actually said it was kind of neat and we talked about it some more. I pointed to the area on my belly where mine will likely be. At the end of our talk I told him he can ask me any questions he wants about the hospital and my operation and we will talk about it. I also promised him that I will say goodbye to him before I leave for the hospital. I think he was nervous that he would go to school and come home and I would be gone. I am hoping all of these things help settle this in his mind somewhat, but I'm prepared to keep repeating and explaining if I have to.
My husband and I talked about whether or not I would show my older son the stoma. Right now I'm not showing him stoma pictures because I don't want him to be frightened by how they look. I plan to wear a solid bag (versus clear) so he won't be seeing it in the normal course of things. I kept going back and forth over whether I should show it to him once I'm home from the hospital. It's not that I want to hide it, but I'm not sure it's necessary either. Finally my husband said, "Well, you wouldn't go out of your way to show him your butt, right?" That made sense to me. My current thoughts on this are that I am not going to make a special effort to show him the stoma but, if he is around when I am changing the bag or something and wants to see it, I will let him look and answer his questions. I think that's a good place to be right now.
My youngest is not quite seven months old, so I don't think there is much impact for him at this point. He loves snuggling up in bed with Mommy, so even my bad days aren't too much of a burden on him. Probably the only negative experience for him is when I have to quickly stick him in his crib (especially if he was in the middle of a feeding!) so I can run into the bathroom. I've spent a few days like that with him crying in the crib and me trying to console him from the bathroom letting him know I'd be right there as soon as I could. Not fun, but probably not anything that will stick with him later on.
My oldest is almost four years old. He's seen me in pretty bad shape. I can remember when they wanted me to try an iron supplement and I reacted very poorly to it. The result was an extremely painful flare up that had me laying on the bathroom floor crying, sweating, and moaning until I finally puked up everything I'd eaten in the previous year (at least that's what it felt like). It was just my boy and I at home that morning, and I remember him being really scared. I tried to hold myself together as much as I could, but the pain was just too much. He was so sweet patting me and hugging me and telling me it was ok. When I finally threw up, he cheerfully told me I would feel better now. We spent the morning snuggled up on the couch watching cartoons and he just wanted to stay next to me the whole time.
I try not to let him know when I don't feel good because he worries and I don't want him to feel uncertainty. Sometimes it can't be helped though. There are plenty of mornings where his getting ready for school routine is conducted with me sitting on the toilet and him bringing me his clothes so I can help him dress, etc. He knows sometimes my belly hurts and I'm tired and need lots of naps. I've never really tried to explain UC to him though because I wasn't really sure how to do it.
A few days ago I started talking to him about Mommy going to the hospital. I wanted him to have time to digest this news and ask me any questions he might have. At first there was just a lot of "Are you going to the hospital now?" followed by my reminding him how many more days were left before I go. We would go over what is going to happen and that his grandma is going to come take care of him. I thought he was taking it all pretty well and he really didn't seem to have any questions. Then I picked him up from preschool yesterday.
The teacher handed me an orange paper with a disciplinary report written out on it. I knew immediately what the orange meant as it was all laid out in the parent handbook. I also remember reading about this process and feeling certain I'd never see one of those papers. Ha! Joke's on me! At any rate, apparently my sweet boy has been freaking out at school the last few days which culminated in him kicking, hitting, and screaming at a teacher in the nap room yesterday. This kind of thing is entirely not like him and as the director and I were discussing what on earth could have gotten into my typically mild mannered young man it struck me....he's more upset about this hospital thing than he is letting on. He just doesn't know how to talk about it. I made the decision to share the news of my upcoming surgery with them and they agreed it probably had a lot to do with it. I decided I needed to be more proactive in talking with him about what was happening and why.
It's always tricky trying to explain something like illness and surgery to a child of this age. I didn't want to make it sound too scary, but I wanted to be as honest as I could so he would understand. As I was trying to figure out the best way to go about about this, I remembered a book he got for Christmas called The Gas We Pass. There is a pretty good kid friendly drawing in this book that shows the digestive system and how food passes through it. I got the book out and showed him the drawing and pointed out the large intestine. I told him that part of my body was really sick and the doctor at the hospital was going to do an operation to take it out and make me better. He actually got kind of excited and said, "They are going to take the sick part out of your belly! Cool!" We talked about how right now with that sick part in there my belly hurts a lot and I have "mean poops" (his own terminology for diarrhea) a lot of the time. I told him when they took the sick part out it would fix that. I decided to take this opportunity to explain the ostomy bag to him, too. It took a couple of tries to convince him that I wasn't going to poop out of my bottom anymore, but into a bag on my belly. He actually thought it was hilarious that farts would come out into the bag, too. He wanted to know if we could pour the farts in a bottle to keep them! I told him that probably wouldn't work too well.
Then he looked up at me with those big brown eyes and asked me, "Mommy, what will the bag on your belly look like?" I had actually been waiting for this question and I asked him if he wanted to see a picture of one on the internet. He said he did. I went to Facebook, pulled up the Uncover Ostomy photo page, and showed him some pictures of women with their ostomy bags. I steered clear of the post-op pics there and focused on the others. There are some great pictures there of people looking proud and happy with their ostomies. He actually said it was kind of neat and we talked about it some more. I pointed to the area on my belly where mine will likely be. At the end of our talk I told him he can ask me any questions he wants about the hospital and my operation and we will talk about it. I also promised him that I will say goodbye to him before I leave for the hospital. I think he was nervous that he would go to school and come home and I would be gone. I am hoping all of these things help settle this in his mind somewhat, but I'm prepared to keep repeating and explaining if I have to.
My husband and I talked about whether or not I would show my older son the stoma. Right now I'm not showing him stoma pictures because I don't want him to be frightened by how they look. I plan to wear a solid bag (versus clear) so he won't be seeing it in the normal course of things. I kept going back and forth over whether I should show it to him once I'm home from the hospital. It's not that I want to hide it, but I'm not sure it's necessary either. Finally my husband said, "Well, you wouldn't go out of your way to show him your butt, right?" That made sense to me. My current thoughts on this are that I am not going to make a special effort to show him the stoma but, if he is around when I am changing the bag or something and wants to see it, I will let him look and answer his questions. I think that's a good place to be right now.
Wednesday, March 9, 2011
The Snail
Something kind of cool happened today. I have all these little items I keep trying to sort out before this whole surgery thing goes down. I guess it's my way of trying to feel like I can be a little bit in control of the situation. Some of them are necessary but not fun things, like finally meeting with the lawyer to get a will made. Some of them are (slightly) less necessary but more fun things like trying to figure out how I will launch my running comeback. I know people with ostomies are out there living active lives and I plan to be one of those people as soon as I'm healed up enough to get back out there. I've been thinking about logistics around running and things like do I want to get the Stealth Belt? How quickly will I be able to get back to my current fitness level? And how will I meet the new hydration demands of my altered digestive system? I'm not sure about the answer to the first two items, but I've been researching pretty intensely on the last one.
When you don't have a colon, your body loses a lot of it's natural ability to absorb water and electrolytes. This means people with ileostomies have to be very careful about hydration, especially when exercising. I also keep reading that a lot of ostomates have trouble consuming foods and drinks that contain high levels of sugar. This left me concerned about how I would stay hydrated enough for running without consuming mass amounts of Gatorade and therefore mass amounts of sugar. I did happen upon Powerade Zero (which I'd somehow forgotten entirely about) and I plan to give that a go. A new discovery for me though was this stuff called nuun. Basically, they are little tablets that you drop into a reusable water bottle. They fizz up to dissolve and then become a non-carbonated, sugar free, electrolyte and hydration drink.
I will admit to being fascinated by their information about the amounts and types of electrolytes they include in their formulations. It sounded like good stuff and I wanted to try it out. I happened upon their Facebook page and they had a post up where they invited people to leave a comment and they would pick winners to receive a free tube of some new flavors they are rolling out. I left a comment letting them know I was interested in trying nuun to help with hydration when running with my ileostomy, and they picked me as one of the winners to try the new flavors. I'm pretty psyched to get to try this stuff out for free. They are sending me the new fruit punch flavor. Once I try it, I will be sure to report back on what I thought. It will be awhile before I'll get to use any on the run, but I'm sure it will also be good for general hydration needs after surgery. I also love that they are a small start-up type company. I love being able to support that type of business!
On a running related note, I was really struggling with getting motivated for my run today. I knew I needed to do it, but my head was just not in the right place. I got all caught up in this feeling of wondering why I should even bother. I mean, I'm about to have this huge layoff. I have no idea how long it will be until I can run again. When I do start back up, it's going to take rebuilding all over again. Once I really get solidly going again, it will be time for Step 2 surgery and then I'll just go through the roller coaster all over again. I was feeling pretty sorry for myself. I shared my pity party with some of my running friends online, and I was reminded of my race report following completion of the Twisted Ankle trail half marathon in 2009.
I entered that race entirely untrained, starting a UC flare, and coming off of a nasty bout of bronchitis. I really had no business doing it at all, but I had been looking forward to it for so long that I was going to be there if it killed me. It never came to that, but I did struggle mightily. It was the most physically difficult race I've ever done. There is one monstrosity of a hill affectionately named "Becky's Bluff" after the race director. That thing is a beast! (the hill, not Becky...she is quite lovely) It's pretty much straight up forever and you have to grab with your hands and climb and all sorts of billy goat like antics just to get up the damn thing. Becky's Bluff sucked what little bit of air I had left right out of my wheezing lungs. My heart rate was hammering, I was light headed, and I seriously thought I would have a DNF for the first time in my racing life. Just as I was contemplating going back down and asking someone to get me off of that mountain, I happened to look down and see a snail right between my shoes. He was just inching along up the hill like everything was cool. I decided if that little snail could get up that hill, then surely I could do the same and I got moving again. It wasn't easy, but I did it.
That snail propelled me through the remainder of the extremely difficult course that day. I'd nearly forgotten about him until today when one of my running buddies reminded me and challenged me to be the snail today. That was exactly the kick in the pants I needed and I'm happy to report it resulted in 3.5 miles at a really speedy pace for where I am in my running right now. I felt so great afterward and was grateful to my friend for providing that nudge right when I needed it.
So why bother when I know I'm going to have to start over (and over, and over by the time this is all said and done)? Because running is what I do. It's brought so many beautiful people and experiences into my life that I can never repay wherever it is they all come from. Because on Saturday my training group will be there waiting for me. Because there are only six more runs on the schedule before I head up to Cleveland and I deserve to savor every single one. Because I don't know any other way than to forge ahead despite all obstacles. Because I am the snail!
P.S. For those who are wondering, I actually ended up losing 0.8 pounds for the week! I'm not sure how that happened, but I'll take it.
When you don't have a colon, your body loses a lot of it's natural ability to absorb water and electrolytes. This means people with ileostomies have to be very careful about hydration, especially when exercising. I also keep reading that a lot of ostomates have trouble consuming foods and drinks that contain high levels of sugar. This left me concerned about how I would stay hydrated enough for running without consuming mass amounts of Gatorade and therefore mass amounts of sugar. I did happen upon Powerade Zero (which I'd somehow forgotten entirely about) and I plan to give that a go. A new discovery for me though was this stuff called nuun. Basically, they are little tablets that you drop into a reusable water bottle. They fizz up to dissolve and then become a non-carbonated, sugar free, electrolyte and hydration drink.
I will admit to being fascinated by their information about the amounts and types of electrolytes they include in their formulations. It sounded like good stuff and I wanted to try it out. I happened upon their Facebook page and they had a post up where they invited people to leave a comment and they would pick winners to receive a free tube of some new flavors they are rolling out. I left a comment letting them know I was interested in trying nuun to help with hydration when running with my ileostomy, and they picked me as one of the winners to try the new flavors. I'm pretty psyched to get to try this stuff out for free. They are sending me the new fruit punch flavor. Once I try it, I will be sure to report back on what I thought. It will be awhile before I'll get to use any on the run, but I'm sure it will also be good for general hydration needs after surgery. I also love that they are a small start-up type company. I love being able to support that type of business!
On a running related note, I was really struggling with getting motivated for my run today. I knew I needed to do it, but my head was just not in the right place. I got all caught up in this feeling of wondering why I should even bother. I mean, I'm about to have this huge layoff. I have no idea how long it will be until I can run again. When I do start back up, it's going to take rebuilding all over again. Once I really get solidly going again, it will be time for Step 2 surgery and then I'll just go through the roller coaster all over again. I was feeling pretty sorry for myself. I shared my pity party with some of my running friends online, and I was reminded of my race report following completion of the Twisted Ankle trail half marathon in 2009.
I entered that race entirely untrained, starting a UC flare, and coming off of a nasty bout of bronchitis. I really had no business doing it at all, but I had been looking forward to it for so long that I was going to be there if it killed me. It never came to that, but I did struggle mightily. It was the most physically difficult race I've ever done. There is one monstrosity of a hill affectionately named "Becky's Bluff" after the race director. That thing is a beast! (the hill, not Becky...she is quite lovely) It's pretty much straight up forever and you have to grab with your hands and climb and all sorts of billy goat like antics just to get up the damn thing. Becky's Bluff sucked what little bit of air I had left right out of my wheezing lungs. My heart rate was hammering, I was light headed, and I seriously thought I would have a DNF for the first time in my racing life. Just as I was contemplating going back down and asking someone to get me off of that mountain, I happened to look down and see a snail right between my shoes. He was just inching along up the hill like everything was cool. I decided if that little snail could get up that hill, then surely I could do the same and I got moving again. It wasn't easy, but I did it.
That snail propelled me through the remainder of the extremely difficult course that day. I'd nearly forgotten about him until today when one of my running buddies reminded me and challenged me to be the snail today. That was exactly the kick in the pants I needed and I'm happy to report it resulted in 3.5 miles at a really speedy pace for where I am in my running right now. I felt so great afterward and was grateful to my friend for providing that nudge right when I needed it.
So why bother when I know I'm going to have to start over (and over, and over by the time this is all said and done)? Because running is what I do. It's brought so many beautiful people and experiences into my life that I can never repay wherever it is they all come from. Because on Saturday my training group will be there waiting for me. Because there are only six more runs on the schedule before I head up to Cleveland and I deserve to savor every single one. Because I don't know any other way than to forge ahead despite all obstacles. Because I am the snail!
P.S. For those who are wondering, I actually ended up losing 0.8 pounds for the week! I'm not sure how that happened, but I'll take it.
Tuesday, March 8, 2011
Food Issues
Anyone who knows me knows that I have struggled with my weight for a long time. My UC typically has not caused any weight loss. This is a good thing, but it also means I have to work hard to lose weight just like non-UC'ers. Prior to my second pregnancy I joined Weight Watchers and lost about 20 pounds. I got pregnant and stopped going to meetings, but I was determined I would start back up soon after my baby was born and seriously get to work on getting to a healthy weight. My youngest will be seven months old next week and I am happy to report I did what I said I would and have lost 50 pounds since he was born. To get to my goal weight, I need to lose 50 more.
Now there are a lot of sides to this thing: wanting to look better, feel and be healthier, run faster, be stronger, and buy cute clothes. Since I am now on the path to a j-pouch I have another motivation: Dr. Lavery will not do my Step 2 and 3 surgeries until I get this weight off. That's huge! The ileostomy is going to get me healthy and I am grateful for that opportunity. The pouch though is the thing that will restore my continence and make my life as "normal" as it's ever going to be thanks to this stupid illness. I need to get in the required shape to make those additional surgeries happen. It's extremely important to me.
So tell me then friends why it is I've been completely off the rails food-wise for the last five days or so? I've been trying to get to the bottom of that all day today so that I can put the brakes on and get back to my regularly scheduled programming. I think it boils down to two things: 1) I am incredibly stressed and anxious about the surgery and 2) I am worried about food restrictions with the ostomy.
Yes, I am a bit freaked out about the surgery coming up. Do I feel like it's the right thing to do? Absolutely. I just dropped my Prednisone back down to 30 mg and I'm already waking up with left side abdominal pain. I am confident in my position against trying biologic drugs and that I've picked the best facility and surgical team I could have. Still, this is huge. Nobody can sit back and think, "Ok, so they are going to take out a third of my digestive system. Sure, no problem!" I know I will get through it, but I also know when I look back on the most significant days in my life it's going to be things like the day I married my husband, the days my sons were born, and the day they took out my diseased colon. I've tried to give myself a little leeway to freak out, but I need to find a better way to channel that stress. I am not supposed to be using food as an emotional crutch or coping mechanism anymore. I know better.
I am also worried about food restrictions with the ileostomy and how limited my diet will be. There seem to be two camps: those who eat pretty much whatever they want, and those who don't seem to be able to eat much at all without having problems. I am hoping I will end up in the first group. I've never had a problem with strictures or obstructions, so I'm hoping that will carry over to life with a stoma. I'm trying to just have a wait and see attitude and be optimistic, but part of me looks at foods I enjoy and thinks, "When will I be able to have this again?" For someone with a history of dieting, that thought alone is enough to end up face down in a pint of Ben and Jerry's. I'm not there yet, but the last few days have not been what they should in terms of what I've been eating. It's time to stop and be reasonable. Adding pounds I don't need before surgery is not going to help my recovery or my progress toward Step 2. Time to get a grip, girl!
I have my Weight Watchers weigh-in this evening. I'm fully expecting a gain. I will take my lumps at the scale and then get right back on the horse for a new week. All day today I've been giving myself a little pep talk about how there are so many things outside of my control in this situation, but the one thing I have complete and total control over are my choices about what food I am going to consume and what exercise I am going to do. Those are things I can do my very best at to help these next two weeks go by smoothly. I'm going to do it!
Now there are a lot of sides to this thing: wanting to look better, feel and be healthier, run faster, be stronger, and buy cute clothes. Since I am now on the path to a j-pouch I have another motivation: Dr. Lavery will not do my Step 2 and 3 surgeries until I get this weight off. That's huge! The ileostomy is going to get me healthy and I am grateful for that opportunity. The pouch though is the thing that will restore my continence and make my life as "normal" as it's ever going to be thanks to this stupid illness. I need to get in the required shape to make those additional surgeries happen. It's extremely important to me.
So tell me then friends why it is I've been completely off the rails food-wise for the last five days or so? I've been trying to get to the bottom of that all day today so that I can put the brakes on and get back to my regularly scheduled programming. I think it boils down to two things: 1) I am incredibly stressed and anxious about the surgery and 2) I am worried about food restrictions with the ostomy.
Yes, I am a bit freaked out about the surgery coming up. Do I feel like it's the right thing to do? Absolutely. I just dropped my Prednisone back down to 30 mg and I'm already waking up with left side abdominal pain. I am confident in my position against trying biologic drugs and that I've picked the best facility and surgical team I could have. Still, this is huge. Nobody can sit back and think, "Ok, so they are going to take out a third of my digestive system. Sure, no problem!" I know I will get through it, but I also know when I look back on the most significant days in my life it's going to be things like the day I married my husband, the days my sons were born, and the day they took out my diseased colon. I've tried to give myself a little leeway to freak out, but I need to find a better way to channel that stress. I am not supposed to be using food as an emotional crutch or coping mechanism anymore. I know better.
I am also worried about food restrictions with the ileostomy and how limited my diet will be. There seem to be two camps: those who eat pretty much whatever they want, and those who don't seem to be able to eat much at all without having problems. I am hoping I will end up in the first group. I've never had a problem with strictures or obstructions, so I'm hoping that will carry over to life with a stoma. I'm trying to just have a wait and see attitude and be optimistic, but part of me looks at foods I enjoy and thinks, "When will I be able to have this again?" For someone with a history of dieting, that thought alone is enough to end up face down in a pint of Ben and Jerry's. I'm not there yet, but the last few days have not been what they should in terms of what I've been eating. It's time to stop and be reasonable. Adding pounds I don't need before surgery is not going to help my recovery or my progress toward Step 2. Time to get a grip, girl!
I have my Weight Watchers weigh-in this evening. I'm fully expecting a gain. I will take my lumps at the scale and then get right back on the horse for a new week. All day today I've been giving myself a little pep talk about how there are so many things outside of my control in this situation, but the one thing I have complete and total control over are my choices about what food I am going to consume and what exercise I am going to do. Those are things I can do my very best at to help these next two weeks go by smoothly. I'm going to do it!
Monday, March 7, 2011
T Minus 14 Days
I had my consult at Cleveland Clinic with Dr. Lavery on Wednesday, March 2nd. The following is taken from a post I made over at Healing Well the next day:
Well, today was a lot to digest! I had my consult this afternoon with Dr. Lavery. There was also a doctor who "works for him" in attendance and an additional doctor who was visiting from San Diego apparently learning stuff from them and checking out the facility. I was greeted with a surprise "peek at the bottom" which I wasn't expecting. He did a digital exam and then put some sort of scope in there so they could evaluate things. Turns out after three weeks of Prednisone @ 40 mg and 1 week of Rowasa enemas I still have a decent amount of inflammation going and contact bleeding that they were able to observe. Not very encouraging.
Dr. L did think surgery would be a good course of action for me if I don't want to try the biologics, etc. We had a good discussion about my rationale behind that and he seemed satisfied that I've adequately thought it through. What I wasn't prepared for was hearing that he would only consider j-pouch for me as a three step process. Once he went into his reasoning though, I felt comfortable with why and I understand it. There are two concerns: first is my use of Prednisone and worry about organ softness, etc. The second is my current weight. I had a baby in August and have been going to Weight Watchers since then and having great success (I've lost 50 pounds) but I still need to lose another 40-50 pounds to be at an ideal or healthy weight for my height. He said he would not be comfortable constructing the pouch while I am carrying this much excess weight. That seems reasonable.
So what he is suggesting is to remove the colon and have the ileo for six months or so (or longer if I want to) to let my body recover from steroid use and also let me get to my goal weight. Then do the step 2 for construction, heal up from that, and then step 3 for takedown. I asked about my thoughts on waiting until October (which should give me enough time to resolve the weight issue) but given the current state of things that would likely mean 7 more months of steroids which isn't going to resolve that concern and is only going to be harder on my body. So, either way I'm looking at 3 steps unless I just want to go straight to a permanent ostomy. I'm really wanting to give the pouch a shot though.
I have a lot to wrap my head around at this point. I'm 2/3 of the way into training for a half marathon that I want to run in mid-May. I really would like to see that through. I feel like psychologically I need it. I think I would be ok at that point getting the first step done. I would think if I do that in mid-May, then I should be fine to go on our beach vacation over the 4th of July....what do you guys think? Tacking 6'ish months onto that would also put me back at the timeline I was originally thinking of for fall and I could do step 2 then. The major wrinkle is with my youngest son who is 6 months right now and nursing. He'll be 9 months then and I had hoped to nurse him until 1 year old, but I don't think I can manage that post-surgery with the recovery, too. It just seems like too much. I know it wouldn't be the end of the world to switch him to formula for those last few months, but there is an emotional acceptance thing there that needs to happen on my part. My husband and I are in the process of discussing and trying to see what we're comfortable with. This is really difficult. In addition, it looks like a minimum of 9 months (maybe more?) with the ostomy which is more than I was mentally prepared for. I have a feeling though that once you make the initial adjustment to it, it's really not a big deal if it's 3 months or 6 or 9.
The day after I made this post, I started feeling light headed and really tired after lunch. I dug out my glucose monitor (leftover from my pregnancy when I had gestational diabetes) and found my sugar was 201 an hour after eating. Way too high. Coupling this with the high blood pressure reading I got in the surgeon's office the day before, and it was really easy to see the writing on the wall: Prednisone is ruining my health. My husband and I talked things over and we decided not to wait until May for surgery. I made some phone calls to Dr. Lavery's office and am now scheduled for Step 1 of my three step j-pouch surgery on Tuesday, March 22nd. I will check in at Cleveland Clinic on Monday the 21st for pre-op and my meeting with the stoma nurse.
It's really difficult to explain how I feel right now. My emotions are in over-drive and I find myself randomly crying over stupid things. Part of this is still no doubt steroid related, but it's also just a lot to take in. The support boards I've been participating in online help tremendously. Just reading about other people's experiences and being able to ask them questions helps with feeling like you aren't the only one going through this. I've also been spending time looking at pictures of stomas, post-op pictures, and videos/tutorials of people changing their appliances. The more I do this, the more normal it starts to feel and the less freaked out I am about life with the ileostomy. At this point I am confident I will be ok once I get through the initial surgical recovery. I know there will be a learning curve as to figuring out which appliance works best for me, but I'm ready to take that challenge on.
There are a couple of things I had to work out. The first involves my almost seven month old son who is still nursing. I have enough milk in the freezer to last him about five days. I will be working to add to that up until it's time to go to the hospital. While my mother-in-law is caring for him, we are prepared to supplement with formula if we need to. I am going to attempt to take my pump to the hospital and pump enough during my stay to keep my supply alive. I'm not going to try to bring any of the milk home because between it being pumped in a hospital and all the drugs I'll be on, I would rather just throw it out. The goal is just to keep milk production going until I get home again. Once I am home, we will use a combination of pumping and bottle feeding and having my husband hold and position the baby so I can nurse. We feel like I'll be able to do some nursing in bed and also in a recliner with the Boppy pillow to protect my incision and my husband there to help position and support the baby. I've already given myself permission in advance to stop at any point if it's just too much. I also told my husband he will probably actually have to do the pumping the first day as I'll likely be too out of it. I at least to feel like I tried and we'll see how it works out.
The second item was missing out on my half marathon in May. This was as difficult emotionally, if not more so, than the nursing situation. I've poured a lot of myself in training these past few months. I've also been sick so it's meant scraping together every last bit of extra energy I have somedays just to get through the workouts. At the same time, running has kept me sane, helped me cope, and reminded me that I am strong and capable despite what this disease has tried to do to me. I had to force myself to realize that my long term health was at stake and there will be other races once I recover. I don't want my training to be in vain though, so on Saturday the 19th I am running 13.1 miles as my own personal half marathon. There won't be the normal race day excitement or a cool t-shirt or any of that...but I am doing this for me so I guess I don't need all of that stuff. I'm looking forward to it a lot and I think it will help me to close the door on this chapter of my life that has been so defined by my illness. I'm so ready to move on to the next thing! I am setting a goal for myself to enroll in the next season with my training group and join the walkers to get ready and walk the half marathon in Columbus this October. I've also set my sights on running my traditional 5 mile Turkey Trot on Thanksgiving Day. Having these two goals to work toward will really help me have something to focus on during recovery. I'm excited to see how I do.
Today I got to refill my meds for the last time. I will be so happy to get rid of all of these pills and their side effects! I would love it if my local pharmacist forgot what I look like. I had a chat with my GI today and he reminded me that when this is all said and done I won't need him anymore. All of these great things I have to look forward to by getting rid of my diseased colon!
Well, today was a lot to digest! I had my consult this afternoon with Dr. Lavery. There was also a doctor who "works for him" in attendance and an additional doctor who was visiting from San Diego apparently learning stuff from them and checking out the facility. I was greeted with a surprise "peek at the bottom" which I wasn't expecting. He did a digital exam and then put some sort of scope in there so they could evaluate things. Turns out after three weeks of Prednisone @ 40 mg and 1 week of Rowasa enemas I still have a decent amount of inflammation going and contact bleeding that they were able to observe. Not very encouraging.
Dr. L did think surgery would be a good course of action for me if I don't want to try the biologics, etc. We had a good discussion about my rationale behind that and he seemed satisfied that I've adequately thought it through. What I wasn't prepared for was hearing that he would only consider j-pouch for me as a three step process. Once he went into his reasoning though, I felt comfortable with why and I understand it. There are two concerns: first is my use of Prednisone and worry about organ softness, etc. The second is my current weight. I had a baby in August and have been going to Weight Watchers since then and having great success (I've lost 50 pounds) but I still need to lose another 40-50 pounds to be at an ideal or healthy weight for my height. He said he would not be comfortable constructing the pouch while I am carrying this much excess weight. That seems reasonable.
So what he is suggesting is to remove the colon and have the ileo for six months or so (or longer if I want to) to let my body recover from steroid use and also let me get to my goal weight. Then do the step 2 for construction, heal up from that, and then step 3 for takedown. I asked about my thoughts on waiting until October (which should give me enough time to resolve the weight issue) but given the current state of things that would likely mean 7 more months of steroids which isn't going to resolve that concern and is only going to be harder on my body. So, either way I'm looking at 3 steps unless I just want to go straight to a permanent ostomy. I'm really wanting to give the pouch a shot though.
I have a lot to wrap my head around at this point. I'm 2/3 of the way into training for a half marathon that I want to run in mid-May. I really would like to see that through. I feel like psychologically I need it. I think I would be ok at that point getting the first step done. I would think if I do that in mid-May, then I should be fine to go on our beach vacation over the 4th of July....what do you guys think? Tacking 6'ish months onto that would also put me back at the timeline I was originally thinking of for fall and I could do step 2 then. The major wrinkle is with my youngest son who is 6 months right now and nursing. He'll be 9 months then and I had hoped to nurse him until 1 year old, but I don't think I can manage that post-surgery with the recovery, too. It just seems like too much. I know it wouldn't be the end of the world to switch him to formula for those last few months, but there is an emotional acceptance thing there that needs to happen on my part. My husband and I are in the process of discussing and trying to see what we're comfortable with. This is really difficult. In addition, it looks like a minimum of 9 months (maybe more?) with the ostomy which is more than I was mentally prepared for. I have a feeling though that once you make the initial adjustment to it, it's really not a big deal if it's 3 months or 6 or 9.
The day after I made this post, I started feeling light headed and really tired after lunch. I dug out my glucose monitor (leftover from my pregnancy when I had gestational diabetes) and found my sugar was 201 an hour after eating. Way too high. Coupling this with the high blood pressure reading I got in the surgeon's office the day before, and it was really easy to see the writing on the wall: Prednisone is ruining my health. My husband and I talked things over and we decided not to wait until May for surgery. I made some phone calls to Dr. Lavery's office and am now scheduled for Step 1 of my three step j-pouch surgery on Tuesday, March 22nd. I will check in at Cleveland Clinic on Monday the 21st for pre-op and my meeting with the stoma nurse.
It's really difficult to explain how I feel right now. My emotions are in over-drive and I find myself randomly crying over stupid things. Part of this is still no doubt steroid related, but it's also just a lot to take in. The support boards I've been participating in online help tremendously. Just reading about other people's experiences and being able to ask them questions helps with feeling like you aren't the only one going through this. I've also been spending time looking at pictures of stomas, post-op pictures, and videos/tutorials of people changing their appliances. The more I do this, the more normal it starts to feel and the less freaked out I am about life with the ileostomy. At this point I am confident I will be ok once I get through the initial surgical recovery. I know there will be a learning curve as to figuring out which appliance works best for me, but I'm ready to take that challenge on.
There are a couple of things I had to work out. The first involves my almost seven month old son who is still nursing. I have enough milk in the freezer to last him about five days. I will be working to add to that up until it's time to go to the hospital. While my mother-in-law is caring for him, we are prepared to supplement with formula if we need to. I am going to attempt to take my pump to the hospital and pump enough during my stay to keep my supply alive. I'm not going to try to bring any of the milk home because between it being pumped in a hospital and all the drugs I'll be on, I would rather just throw it out. The goal is just to keep milk production going until I get home again. Once I am home, we will use a combination of pumping and bottle feeding and having my husband hold and position the baby so I can nurse. We feel like I'll be able to do some nursing in bed and also in a recliner with the Boppy pillow to protect my incision and my husband there to help position and support the baby. I've already given myself permission in advance to stop at any point if it's just too much. I also told my husband he will probably actually have to do the pumping the first day as I'll likely be too out of it. I at least to feel like I tried and we'll see how it works out.
The second item was missing out on my half marathon in May. This was as difficult emotionally, if not more so, than the nursing situation. I've poured a lot of myself in training these past few months. I've also been sick so it's meant scraping together every last bit of extra energy I have somedays just to get through the workouts. At the same time, running has kept me sane, helped me cope, and reminded me that I am strong and capable despite what this disease has tried to do to me. I had to force myself to realize that my long term health was at stake and there will be other races once I recover. I don't want my training to be in vain though, so on Saturday the 19th I am running 13.1 miles as my own personal half marathon. There won't be the normal race day excitement or a cool t-shirt or any of that...but I am doing this for me so I guess I don't need all of that stuff. I'm looking forward to it a lot and I think it will help me to close the door on this chapter of my life that has been so defined by my illness. I'm so ready to move on to the next thing! I am setting a goal for myself to enroll in the next season with my training group and join the walkers to get ready and walk the half marathon in Columbus this October. I've also set my sights on running my traditional 5 mile Turkey Trot on Thanksgiving Day. Having these two goals to work toward will really help me have something to focus on during recovery. I'm excited to see how I do.
Today I got to refill my meds for the last time. I will be so happy to get rid of all of these pills and their side effects! I would love it if my local pharmacist forgot what I look like. I had a chat with my GI today and he reminded me that when this is all said and done I won't need him anymore. All of these great things I have to look forward to by getting rid of my diseased colon!
Monday, February 28, 2011
Where Have I Been?
Well, let me tell you. I failed at SCD. Epicly hard. It never seemed to do enough for me to make it worth the sacrifices. Does this mean the diet is bad or won't work for someone else? Absolutely not. It just means it wasn't my thing and that is ok.
In August of 2010 I had a beautiful, perfect baby boy. In November I had a flare. Hooray. Back on Prednisone again for five more weeks which cleared things up for me pretty well. Fast forward four weeks and I was back in the GI's office with yet another flare. I started back on 40 mg of Prednisone on February 9th along with nightly Cortenemas. I think the Cortenema made things worse so I stopped them after about a week, yet the Prednisone still didn't seem to be doing anything. We waited another week, and the flare was still beating me up pretty badly. I finally got a flex sigmoidoscopy on February 22nd because my GI wanted to confirm we were still dealing with "just unresponsive UC." The scope showed 20 cm of active inflammation in my rectum and sigmoid colon. Same as all of my previous scopes (five colonoscopies now total over the course of this adventure). Good news: "just" UC, hasn't spread. Bad news: still a lot of active inflammation after two solid weeks on steroids. We decide to throw nightly Rowasa enemas at it, too and see where we are in a week.
A week will pass tomorrow and I am doing so much better. Thank goodness! The bleeding has stopped and the only symptom I have now is some pain in my low left side, mostly in the mornings. I can live with that for now. Something interesting happened though in the process of this flare that initially refused to respond to Prednisone. I decided to consider surgery for my UC. This is new for me. I always thought surgery was something I would never ever do. After four years of fighting this fight, I feel a lot differently. I want it to be over. I want my life back. After all these flares and watching the life drain out of me day by day, the idea of potentially pooping in a bag for the rest of my life seems not so bad somehow.
Wednesday I am meeting for a consult with a colorectal surgeon at the Cleveland Clinic in Cleveland, Ohio. I have 5,001 questions for this man and I hope he will be able to answer most of them. I am trying to determine if I am a good candidate for the j-pouch surgery in which they remove your colon, fashion an internal pouch from your small intestine, and then hook that back up to your rectum once the pouch has a chance to heal up. In between surgeries you have an ileostomy (the bag) which then gets reversed when they hook all of your plumbing back up. It's a seriously major surgery, but once you've had it you don't have Ulcerative Colitis anymore. How awesome would that be?
In August of 2010 I had a beautiful, perfect baby boy. In November I had a flare. Hooray. Back on Prednisone again for five more weeks which cleared things up for me pretty well. Fast forward four weeks and I was back in the GI's office with yet another flare. I started back on 40 mg of Prednisone on February 9th along with nightly Cortenemas. I think the Cortenema made things worse so I stopped them after about a week, yet the Prednisone still didn't seem to be doing anything. We waited another week, and the flare was still beating me up pretty badly. I finally got a flex sigmoidoscopy on February 22nd because my GI wanted to confirm we were still dealing with "just unresponsive UC." The scope showed 20 cm of active inflammation in my rectum and sigmoid colon. Same as all of my previous scopes (five colonoscopies now total over the course of this adventure). Good news: "just" UC, hasn't spread. Bad news: still a lot of active inflammation after two solid weeks on steroids. We decide to throw nightly Rowasa enemas at it, too and see where we are in a week.
A week will pass tomorrow and I am doing so much better. Thank goodness! The bleeding has stopped and the only symptom I have now is some pain in my low left side, mostly in the mornings. I can live with that for now. Something interesting happened though in the process of this flare that initially refused to respond to Prednisone. I decided to consider surgery for my UC. This is new for me. I always thought surgery was something I would never ever do. After four years of fighting this fight, I feel a lot differently. I want it to be over. I want my life back. After all these flares and watching the life drain out of me day by day, the idea of potentially pooping in a bag for the rest of my life seems not so bad somehow.
Wednesday I am meeting for a consult with a colorectal surgeon at the Cleveland Clinic in Cleveland, Ohio. I have 5,001 questions for this man and I hope he will be able to answer most of them. I am trying to determine if I am a good candidate for the j-pouch surgery in which they remove your colon, fashion an internal pouch from your small intestine, and then hook that back up to your rectum once the pouch has a chance to heal up. In between surgeries you have an ileostomy (the bag) which then gets reversed when they hook all of your plumbing back up. It's a seriously major surgery, but once you've had it you don't have Ulcerative Colitis anymore. How awesome would that be?
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